About Rett syndrome

Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.

Finding trusted information is the first step towards simplifying this journey. The information found here is reliable, current and vetted by global experts in the field of Rett syndrome.

What is Rett syndrome?

Rett syndrome is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys.

About the diagnosis and genetic testing

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For more information about the diagnosis and genetic testing, click HERE

Frequently asked questions (FAQ's)

Educate yourself. Learn what causes Rett syndrome, how it will affect your daily life.

The Rett syndrome PSA [Video]

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Newly diagnosed?

The Rett Syndrome HandbookThe Rett Syndrome Handbook is often referred to as the "Bible" for Rett syndrome. Download your PDF copyor call the office at 1-800-818-7388 to order a hard copy to learn everything you need to know and more about Rett syndrome.